NEW JERSEY DAD TREKKING TO MT. EVEREST TO RAISE AWARENESS OF RARE GENETIC DISEASE
JAR of Hope Founder Hopes 'Climb for a Cure' Raises Funds for Duchenne Muscular Dystrophy
22 Feb, 2022, 16:30 ET
ASBURY PARK, N.J., Feb. 22, 2022 /PRNewswire/ -- How far would you go to raise awareness of your son's rare disease? One New Jersey father is going all the way to Mt. Everest. James Raffone, the founder of JAR of Hope, is tackling this mammoth challenge to raise awareness and funds for Duchenne Muscular Dystrophy (DMD).
Raffone has tackled many physical challenges in the past, running thousands of miles and doing thousands of pushups to spread awareness and to raise funds for DMD. And now in a time when in-person fundraising is difficult, Raffone is turning to a different tactic: Mt. Everest.
Raffone, along with teammates Dillon Doeden and Matthew Scarfo, will fly to Kathmandu at the end of April. While there, they will meet with families who have sons with DMD, many of whom have multiple children with this devastating illness. Their plan is to share therapies, information and resources about DMD, which has killed 70 children in Kathmandu in the past 15 years. Once that phase of the trip is over, the three men will take a 12-day round trip trek to Base Camp of Mt. Everest, reaching an elevation of 17, 598 feet.
"My team and I know that climbing for a cure is just a metaphor" said Raffone, "but we hope that by the time we get to base camp, we will have raised awareness and funding to find a cure for this debilitating disease. Our goal is to get to base camp because kids with DMD can never reach that high."
JAR of Hope is currently raising funds to support a patient-funded clinical trial at the University of Florida. The University, through the FDA, will host a 12-patient clinical trial that will cost $1.5 million. Families of the trial need to raise $750,000 to support the Investigative New Drug Application, or the IND.
"This is why Everest came about," said Raffone. "We need to raise something big to raise some eyebrows and ask 'why are we doing this?' We are trying to raise the money we need in a short period of time."
Raffone founded JAR of Hope in September 2013. Named after his son, James Anthony Raffone, the foundation has raised nearly $9 million to date and has donated that money to research and to direct family support, helping families purchase much-needed equipment and supplies for their children with DMD.
Duchenne muscular dystrophy is a rare muscular degenerative disease that affects 16 out of every 100,000 children per year. Characterized by muscle and skeletal weakness that worsens over time, DMD is caused by genetic changes in the DMD gene. Duchenne Muscular Dystrophy occurs primarily in boys, although in rare cases it may affect girls. There is no known cure for DMD, although treatments can help to control symptoms, which include heart and lung problems as well as the inability to walk, requiring the use of a wheelchair. The current life expectancy is about 27 years.
There will be a benefit concert held on Wednesday, January 23 at 6 p.m. at the Berkeley Hotel in Asbury Park to support Climb for a Cure. Tickets may also be purchased at the door.
For more information on DMD and JAR of Hope, visit JARofHope.org.
SOURCE JAR of Hope
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